BY HELEN IRVING / NEW YORK DAILY NEWS
FRIDAY, JUNE 14, 2013, 3:12 PM
In this May 30, 2013 file photo provided by the Murnaghan family, Sarah Murnaghan, left, lies in her hospital bed next to sister Ella.
Err on the side of life
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Parents of 10-year-old with cystic fibrosis go public to find organ donor
Over the past week and a half, the cases of two children who are experiencing the desperate wait for organ transplants at The Children’s Hospital in Philadelphia have electrified the media and captured the attention of the American public.
Diagnosed with cystic fibrosis, Sarah Murnaghan and Javier Acosta, both under 12 years old, have seen their conditions deteriorate as they await life-saving lung transplants. Their families, dismayed at the length of time it has taken to receive a lung transplant via the child waiting list, filed federal lawsuits to place them on the adult lung transplant waiting list. The judge in both cases ordered federal authorities to place them on the adult transplant waiting list for ten days. And, just Wednesday, Sarah received the transplant.
Additionally, the national Organ Procurement Transplantation Network adjusted its policy, and now will allow children under 12 awaiting a lung transplant to have their cases reviewed by a national board of lung transplant surgeons. The board would then make a decision whether to place the child on the adult and adolescent list.
The cases of Sarah and Javier ignited a debate about the fairness and equity of organ donation policies and allocation. We can debate this all we want, both in the media and in our homes.
When the media attention goes away, however, the fact will still remain: Sarah and Javier’s agonizing wait for a transplant is replicated day in and day out in hospitals and homes all over the United States, including right here in New York. In fact, in New York alone, 10,000 people wake up every day wondering if that day will be the day that they receive the organ transplant they need to survive.
Many of these gravely ill New Yorkers have the disturbing, but very real statistic in the back of their minds: every 17 hours, a New Yorker dies waiting for a transplant. Last year, that translated to the deaths of 554 New Yorkers across the state.
What makes those deaths and the deaths of others waiting for a transplant even more upsetting? They didn’t have to happen. Unlike others with terminal illness, for those waiting for a transplant, there is a cure.
Why do so many people die waiting for a transplant? In a word: inertia. More specifically, our inability in New York to take the life-saving step to enroll to be an organ and tissue donor. More than 80% of New Yorkers support organ donation. But we simply avoid the issue or procrastinate, refusing to believe it will ever affect us or our loved ones. We do not want to think about death or the death of those closest to us. Some of us believe that our doctors won’t care for us or work as hard to save our lives if we agree to be a donor.
The result? New York state lags significantly behind the rest of the nation in percentage of residents enrolled to be organ donors, with only 21% of the eligible (18+) population enrolled (as opposed to the national state average of 45%). With fewer donors, and therefore fewer organs, wait times for an organ transplant in New York are some of the highest in the United States.
If more people said yes to donation, more New Yorkers, many of them children like Sarah and Javier, would have received a transplant by now and the number of New Yorkers who would be given a second chance at life would be much higher. They would not be dying in the hospital, nor would their parents be faced with losing a child.
The stories of Sarah and Javier are heart-wrenching. No child, no person for that matter, should suffer such long waits, or even worse, die waiting for an organ. So this time, instead of saying “Yeah, I really should get around to registering to become an organ donor soon,” let Sarah and Javier’s stories propel you to action. Help make dying on the wait list a part of history, not a daily reality. Learn more or register now at HateTheWait.org.
Irving is president and CEO of New York Organ Donor Network.